A roller coaster ride

Heather has been through what she describes as a “rollercoaster ride” with her daughter, Arianna. Arianna has Sotos Syndrome, a rare condition characterised by overgrowth in childhood and a multitude of other complications which range from mild to severe.

Heather was unprepared for the upheaval that having a child with special needs would bring to her family, including the need to leave work and stay home as a full-time carer. Heather says “I thought, I have all these skills that I’ve learnt over the years, and suddenly I’m not going to use them ever again.” Heather and her husband Alberto thought that they would have to sell their house.

While visiting Burwood Westfield, Heather met Vinsensia Christanto, Director of Murray House, who was volunteering for The Infants’ Home for Giveability Day. After discovering that The Infants’ Home provides care for children with additional needs, Arianna was enrolled in Murray House at The Infants’ Home. Heather describes her relief at finding somewhere where Arianna could be cared for by people experienced in looking after children with additional needs:

“Starting at The Infants’ Home was a game changer for me. At first, I had a day or two a week to restore my energy. When I realised that Arianna’s health was actually okay, I managed to get a job. It’s really important for me to have something for me, sometimes you just have to be selfish and to look after yourself, because this is a marathon, not a sprint.”

Arianna at The Infants' Home

Arianna’s external therapists have regular meetings with The Infants’ Home Integrated Services team, and Heather, ensuring that she receives the specific care she needs.

Arianna’s educator, Yi, oversaw her progress in the babies room, from being unable to sit unsupported and being tube-fed, to crawling at 14 months, then standing and walking with support, and now finally being able to walk by herself and even eat solid food: “Yi was amazing, she’s just so interested in her development almost more excited than me. It was so reassuring and made me feel like I could just leave Arianna here without feeling guilty. I remember crying, looking at the Xplor app and seeing Arianna drawing with the other kids. You just want your child to be included, enjoy life, and have access and exposure to all the things that any other child would have.”

Heather says that she would always urge parents of special needs children to try The Infants’ Home:

“Arianna has leapt forward since coming to The Infants’ Home. They have got people like occupational therapists, child and maternal health nurses and speech pathologists who can come in and make sure the staff know what they’re doing, who can tube-feed your child if required, can make a special chair for your child if they need it, use communication devices if your child needs it. They really do help the child. The Infants’ Home have been amazing. I can’t fault them.”